My monster says I can’t
I don’t think anybody likes having to say “I can’t”. They’re certainly words that I struggle with. I say them a lot, and each time they’re laced with disappointment, with embarrassment, with anger and defensiveness.
Our society rewards toughness. We’re a culture of battlers, of perserverance. Take a Codral. Soldier on. Autoimmunes are the opposite of this. They demand quiet, stillness, rest. And the more you fight against this regime, the more sick you get.
My autoimmmune feels like I am carrying a monster on my back. Its talons dig into my shoulders. Its weight bears down on me, making everyday tasks just that much harder, and completely exhausting.
Image by Terrifying (deviantart)
Some days I can sleep for 12 hours and still wake up exhausted. Some days reaching above my shoulders feels like benchpressing 20kilos. Some days my brain is so mired in mud I can’t form cohesive sentences, let alone remember what I did yesterday.
It was this time last year that I first started displaying symptoms of my dermatomyositis. Then, I had no idea what was going on. Now, I am hypervigilant.
Everything is a balance. For everything I want to do, for everything I can do, I must also spend time with my AI monster.
I used to hate it. And I’d be lying if I pretended that every day I’m just peachy about this system. But I have realised that this monster is a part of me. This is life now, and its goal actually isn’t to ruin everything and kick me while I’m down. My monster is my protector. He tells me loudly and clearly when enough is enough. When I need to stop. When I need to rest. Because I sure as hell don’t listen otherwise.
I don’t know how long life will be like this. I am currently receiving IVIg treatment (cheers to all the blood and plasma donors!) which gives me a couple of weeks of feeling almost-normal, of feeling like the well of exhaustion that usually threatens to swallow me is securely sealed over. Maybe one day my monster will completely vanish. But even if he does, I know that hidden deep down in my immune system, he’ll always be a part of me.
Melbourne Writers Festival
I’m totally taking a page (or more) out of Adele Walsh’s book (well, blog) to let you know that I’ll be out and about (shock horror) at the Melbourne Writers Festival’s Schools’ Program as part of my work at the Centre for Youth Literature. (Have I mentioned that I love my job? I love my job.)
There are many amazing children’s and YA authors on this year’s program, and you don’t have to be young to attend. (Also, all tickets are only $7. Bargain!) I’m honoured to be chairing the following sessions:
MEET MELINA MARCHETTA
Tuesday 28 August, 10am
Book here apologies – it’s sold out!
READING INTO WRITING – Emily Rodda, John Larkin, and Penni Russon
Wednesday 29 August, 10am
Book here Sold out.
RANGER’S APPRENTICE – John Flanagan
Wednesday 29 August, 11.15am
Book here
MEET EMILY RODDA
Wednesday 29 August, 12.30pm
Book here
ONLY EVER ALWAYS – Penni Russon
Thursday 30 August, 10am
Book here
ADVENTURE AND HONOUR – John Flanagan
Thursday 30 August, 12.30pm
Book here Also sold out now! (Eep!)
So, if you’ve got any burning questions for Melina Marchetta, Emily Rodda, John Larkin, Penni Russon, or John Flanagan, let me know and I’ll endeavour to ask them.
Gymnologise 